Hello Everyone,
My apologies for writing this to you all at once, but I am so exhausted
after my long day of Intrathecal Baclofen trial that one universal note is
all my tired fingers and aching body can handle. The TRIAL ITSELF WAS A
GREAT SUCCESS. I did NOT  have to take oral medications (morphine,
clonazepam, Oxazepam or Amytriptyline for 12 whole hours after Intrathecal
injection. There just was not any pain to speak of. I got a reduction in
tone with only 50mcg of Intrathecal Baclofen. The therapist today again
confirmed that the writing movements I have in my arms, legs,  face, and
sometimes eyes, is indeed secondary dystonia, While the injection did not
lessen their frequency, it did lessen their intensity. The intrathecal
baclofen injection also somehow got rid of my piriformis pain syndrome
temporarily--- and I could feel the sole of my right foot and the back of
my right leg for the first time in eight months.
My gait improved as well-very little intoeing or scissoring-a benefit I
did not expect since I has thought Ihad reached my full potential for
improvement of gait post-selective dorsal rhizotomy. I did not even
require a walker or extra support to move or transfer, and the therapist
had to stop me from running down the hallways independently! My walking
speed and number of steps taken in a certain time period actually
increased as the day wore on, and the drug itself was wearing off. I found
it so much easier to climb stairs-could do so one foot at a time, rather
than placing two feet on one step as I normally would. It was easier to
roll over, to go from sit to stand. My posture in my wheelchair and
sitting tolerance improved greatly post ITB injection.
I had no real side effects ( urinary retention, headache, etc.). My
handwriting improved as well, and I was once again able to sit
cross-legged and bring one leg  up to rest on the opposite knee to do up
my AFOs (leg braces). Usually I am forcing my feet in them in a downward
motion, and this sometimes hurts a lot.
I will sty in London for a few more weeks (MOST LIKELY TILL READING WEK
FEBRUARY 18-24TH0, because, though there will be no immediate surgery,
they want to do more testing, (an       EMG, etc), and some videotaping of
me walking, performing tasks without ITB injection. One of my physio
sessions was videotaped today, so they want it for comparison. I was so
sad when the drug wore off and I was forced to go back to taking morphine,
gravol, oxazepam, etc. I almost cried, because it has been so long since I
could actually say, or mark down on a physician's pin scale, that I was in
no pain. I still marvel that this lasted for 12 hours. The waiting list
for surgery is a little long, so it will probably be in the summer. This
is not necessarily a bad thing, because it will give me time to work with
my own surgical team rather than running around trying to find physicians
familiar with the pump in Ottawa IMMEDIATELY. I am sad that I will
probably have to live on morphine for the rest of the semester, but God
has a reason fir everything, and I must leave it in His Hands
My Mom is having to fight with our private insurance company to cover the
drug, but she has found ain advocate in  the Human Resources Dept.to help
her in this area. I am also going to have the doctor fill out a section 8
form so that the Ontario Disability Support Program will cover the drug
should insurance refuse not to. This is so that all the bases are covered,
so to speak. I wish the surgery could have been sooner, but God has His
reasons for everything. Dr. Parrent (the neurosurgeon), who rushed in
after being in the OR to see me at 5 at night, said that the whole team
had discussed every possible candidate's situation at a meeting last week,
and I was one of the lucky ten to receive a pump this year.
Thank you for all of your prayers. I will let you know how all if the
other testing goes. I am doing my homework from London, and e-mailing it
to my Professors. I find it even too difficult  to attend class when in
Ottawa because the antispasmodics/morphine put me to sleep. So they send
me lecture notes, and I send them back assignments.
Though surgery isn't happening yet, there's still many medical
appointments to go to. Please keep me in your prayers that all goes well,
and that the time until my surgery is booked will fly by It is such a hard
experience to go from having no pain, back to my excruciating, pain which
necessitates morphine within a few hours. Perhaps time will go by faster
than I expect.I never in my wildest dreams thought the intrathecal baclofen injection
would bring with it so many positive outcomes, and I am sure it is due to
all of your prayers. Please say a few that this little insurance mess gets
cleared up, and that surgery occurs sooner rather than later

My thanks for all if your support through my tears and frustration How I
wish I could have just left with the pump implanted today-but God has
another plan in store, for the moment, I guess
My thanks for your prayers, good thoughts and love,

Jenn